My first mothers day.

In 2003 I celebrated my first mothers day. I was a completely different person then. I was a newlywed and a college student. I still lived in Brooklyn. And unlike many fh moms I did not know Nicholas had a limb difference. 

It seems that 20 weeks is the time moms find out. I did not have an ultrasound till 28 weeks. I was seeing midwives and they said it wasn’t really necessary. I only did it so I could have a picture of my baby. I even told the sonographer this when they started. “I am just here to get a picture of my baby.” Sometimes I wonder if she saw his limb difference and didn’t tell me because I said that. 

I could tell from this first photo that Nicholas would be exceptionally good looking! 

It’s really fine with me because I had a relatively uneventful pregnancy and had I found out something was wrong I am sure I would have worried about things way beyond his leg. I have read about countless moms having this stress and fear. But I have also read about moms who felt such a shock because they didn’t know before birth that their baby had a limb difference. 

There is no easy way to learn this information. 

In fact I kind of learned before Nick was born but I didn’t. Because I was past my due date I had to go in every other day I think for non-stress tests and such. At one test when they were measuring the amniotic fluid the gal said “Is there something wrong with his leg” and I said “No” and that was that.

When Nick was born Steven told me after they took him from me that something was wrong. I didn’t notice when I held Nicholas for the first time. I had my magical, untouched by fear moment. I am grateful for that. I am lucky I got that. 

A little later someone brought over his footprints but said they would have them redone because they didn’t turn out right. I looked at the piece of paper and said “No, that’s how his foot is” (I think that’s what I said I am not sure of the exact wording). I hadn’t seen his foot or leg yet. The imprint was my first time. 

I thought I was a mom already when I was pregnant on my first mothers day. Now I don’t really think so. Before Nicholas was born I was not one of those women who would have said “if something goes wrong forget about me and save the baby”. I didn’t care more about his life than my own. I didn’t really know him yet. I wasn’t a mom. 

My real first mothers day in 2004, I can’t even remember. I am sure I was worried about what was to come. I am sure I was grateful for my beautiful boy and I know I wished god could take away one of my legs and give him a complete one. I know I would have done anything for him. I was a mom. 

Confession: I am not a soccer mom.

Today someone posted an article 10 Most Inspirational Athletes With Prosthetic Limbs to the Fibular Hemimelia and Limb Lengthening Awareness Facebook group. These are amazing examples of what hard work and a little technology can do (or in some cases no technology). They are all very impressive.

Personally though I am more inspired by the videos of children with standard prosthesis learning to walk and living their lives. Or kids with fh whose parents chose lengthening doing the same. I guess I feel like there is an over emphasis on athletics in the limb difference world. On both sides to an extent. This is not an attack on anyone for sharing these stories with me or in our group (they’ve been arriving in my inbox for years). Some of those athletes have inspired me too. Amy Mullins in particular, but not because she is a gorgeous model and athlete… it was her TED videos that I have shared on this blog. Because it’s how she thinks about differences and how she inspires others to think differently that inspires me.

Will my child’s overcoming a limb difference be less inspiring because he’s not an athlete? I don’t think it has been so far, but so many people ask if he can play sports. It’s the first thing that’s often asked and I don’t get it! I guess I do get it to an extent, at least when it’s parents of a child with fh who ask. They want to know that if they choose lengthening their child will not have limits. But doesn’t every child have limits? Not everyone is athletic. Not every family can afford all those organized sports.  Not every kid wants to do it anyway.

Look if athletics was my first priority I suppose I would have chosen amputation for Nick. Preserving his own functioning leg was more important to me. Yesterday Nick spent 3 hours outside walking and playing! That’s the stuff I wanted for him when he was a new baby and I didn’t know what the future would hold.

Does Nicholas need to be an athlete for his treatment to be considered successful? Is he less awesome if he is not an athlete? Nick just started swimming lessons. He already knows how to swim but he is learning the strokes and such. He loves it and has already mentioned the possibility of joining our local swim team. I am excited that he wants to do this, I will support him and cheer him on, but it’s because it’s a healthy activity and it makes him happy. Not because I want him to be an athlete or to be able to say that my kid is an athlete.

What about the children who could not possibly ever climb a rock wall or kick a soccer ball? Some children’s bodies come with limits that in the physical sense can’t be overcome. Are they less important or less inspiring? I don’t think so.

What message are we sending when we put athletes on pedestals over and over again and what’s the price?

No Fibula, No Problem, in Poetry

May be used with permission only.

Two views of a year in review…

Now that Nick is without restrictions it reminds me of how far he has come to get here. I decided to make a collage and when I was done I decided to make another. The problem with the first is that I felt like it was over fixator focused. Well not just fixator but surgery. There were so many moments in between.

Still even those surgery moments had a lot of joy. Dr. Standard did an amazing job with Nick’s leg. When the bone collapsed he saved the length. When we needed him he was always there. I didn’t take more than the one picture of him with Nick. Strange but I guess we were always preoccupied when he was around.

Nicholas and I had to work hard sometimes to make the most of it (one of our motto’s), but we so did. We laughed 1,000,000 times more than cried. He was up and moving more than not. He was in good spirits more than down. Even when we had to say “this sucks” we laughed about that.

Fibular Hemimelia (and other dramas of course) defined the last year for me. They took over. No denying it. But fibular hemimelia has never defined my boy. As you can see above and below it’s what you make of it. A fixator can be an air guitar, a hospital can be a haven, siblings can be saviors, bubbles can be a beard, a knee can be a monkey, a son can be a star and no fibula can be no problem.

“Mom, lets go talk about my surgery fears.”

Thats what Nick and I just did. We sat in my bed and I asked him what his fears were. He said the surgery itself and cause he wakes up with surgeons he does not recognize. He asked to see Dr. Standard after surgery this time but I am pretty sure Dr. S goes from operating room to operating room and cant exactly sit by Nick and wait for him to wake up ; ) Thats my job.

So without being able to take this fear away I asked Nick what he thinks we could do to help with fear and he said “think of ways to make the most of it!“. We came up with 10!

• We get to be together.
• Video games at the hospital!
• Getting to eat and drink whatever we want. (He has no idea that there are drinks I would want that I cant actually have at the hospital).
• The awesome hospital rooms. Spacious! Massive TV! Giant sleep chair for moms!
• Hackerman Patz!! Getting to stay across the street from Sinai the night before surgery is awesome and Nick loves it there.
• The snack vending machine at Hackerman Patz.
• Video games at Hackerman Patz.
• Getting to sleep as much as we want in the hospital (he has no idea that this is not at all true).
• Getting to play Minecraft with Charlotte even though we will be far away.
• Having his new kindle fire to use at the hospital and the hospitals wireless internet. I’ve been grateful for that one for a long time myself.

So that’s todays list. By the end of the list making Nicholas was tickling me and laughing and smiling and I was reminded of how insanely lucky I am to be the mother of this most amazing boy!!!!

Teeter Totter Knee or Dynamic Valgus

For the last few weeks Nicholas has had a bit of knee trouble. It started with popping and clicking and sometimes it didn’t want to unbend. This happened a lot for about a week and then has been intermittent since. I was going to take him for an xray closer to home but Thursday I was helping out at the RIAO web chat and I figured I’d ask Dr. Standard about it. My instinct was that he would want to see him. Nick’s knee is unique, which I guess you could say for a lot of FH kids, but Dr. Standard knows it inside and out ; )

I was right and we went to Baltimore yesterday. I was worried that the problem was the ligament Dr. Standard put in in June of 2011. Dr. Standard had the same worries but it turns that is ok. Nick has a teeter totter knee or what’s known as dynamic valgus and he’ll need an eight plate put in to correct it. This was a relief compared to the problem being the ligament so it was good news in a way but then again your kid needing surgery is never actually good news. Yes I am grateful it is smaller, yes I am so grateful it is fixable and yet today I am kind of down about it. It’s actually 2 more surgeries.

Nick was relieved to hear eight plate. He wiped his brow in an expression of relief when he heard it was a small surgery and not happening right now. Can you imagine a kid reacting that way. My boy is really amazing and I know when the time comes he will likely take it in stride but after all he went though in the last year I will pay close attention to his emotions and reactions. It is a lot for a little (or not so little) boy to go through.

So surgery will likely happen by spring and it will have to be sooner if it starts to hurt him. Right now he’s saying it does not hurt but nearly trips him and is annoying. We might opt for January to get it over with in winter. Plus he will likely have the 7 screw plate in his tibia removed when the 8 plate is put in and that will mean weeks of downtime too. Honestly I am glad the plate will be removed. I know it was ok to be there but it is a potential problem in my mind and if it’s not needed I’d rather it be gone.

Teeter Totter Knee

Yesterday was also Christopher’s 5th birthday. We made it a great day despite spending it on Nick’s knee mostly. Chris was excited to get to have lunch in the cafeteria and cake by the water fountain in the atrium in the lobby. I also took them to build a bear at the hospital. It was fun to watch the kids choose their animals and just be happy. Because we bought four I was able to buy $50 in gift cards for $25. Nick asked what we would do with it and I said we’d talk to Marilyn about giving it to kids who will be in Baltimore for the holidays for surgery. When we were in the parking lot he saw a kid in a fixator and he wanted to run after the boy and give him the gift cards. I probably should have let him but we were just getting into the car and with all four kids and Nick would have really had to run to catch up to him.

Going to the RIAO with the four kids myself was not a hard as it could have been. Thankfully we were put in a room pretty quick. It kind of turned into insanity after that. Playing cards strewn across the room, paper from the exam table ripped and thrown, singing, dancing, yelling and general excitement. A doctor who was not working with Dr. Standard peeked in and I said “I bet you’re glad you’re not coming in here”. He just stared and ultimately I think he was entranced with Elizabeth’s singing and dancing (2 year olds are quite entertaining at least to me). As soon as she saw him watching she stopped but it was really a fun moment. When Dr. Standard came in he wasn’t phased by the chaos.

Nick also does not need a shoe lift. His difference is a little more than a centimeter or maybe it was a centimeter and a half. We found that out at the end of the visit so my brain was fried by then. I thought it meant that Nick finally slowed down growing but Dr. Standard said his leg might just be keeping up better at the moment. Sometimes the lengthening stimulates growth and hopefully thats what happening. No lift is a pretty big deal! And makes a nice happy ending to this post.

This Thursday’s web chat info!

“Thursday, we will discuss congenital deformities (e.g., fibular hemimelia, congenital femoral deficiency). The chat will start at 8:00 PM EST. To receive log in information, e-mail icll@lifebridgehealth.org and provide your name and a summary of what you would like to discuss.”

These web chats are an amazing opportunity to ask the Dr. Standard questions and to connect with other families. I’ll be there! If your new to the world of limb differences it is a wonderful opportunity.

Normal Nick

I have dreaded writing on this blog. Sometimes it feels like every time I write something positive something bad happens. I know it’ silly but it worries me.

However I am taking a chance and writing anyway. Nick seems to be back to “normal”. Normal is not my favorite word anyway but still he is just living life like a regular kid. He’s walking and running. He’s going out to play with friends. He’s not in pain.

That’s the best kind of normal there is for us. Not in pain and moving freely. It’s good timing too because this weekend is the 7th annual save a limb ride. We have been there each year. We’ve not always rode or walked but we’ve been there. This year we will have a fibular hemimelia table. I am so excited to meet some of the families who I have known on line for months or in some cases years. This year will be so special because of this and because Nick had such a hard year and is doing so well now.

Another thing I have realized is that I have actually helped a lot of people by writing this blog and creating the Fibular Hemimelia and Limb Lengthening Awareness Facebook group. We didn’t raise as much money as we wanted to this year (it was a hard year for us as a family) but we are working year round to support the fh families. I get multiple messages each week from folks looking for advice or support and I am always happy to help. I am so grateful to these families who reach out to me. Helping them has been so meaningful. Everyone likes to feel useful and it makes me feel very useful. I also appreciate all the appreciation! Reading about how I have helped someone warms my heart so much.

Nick has been though so much. This is all about him after all but it is actually about our whole family and me as a mom (that’s a lot of what I write about). Being able to make the most of what life gives us is something I am proud of. Being able to take it a step further and help others gives my life additional meaning. I don’t know how many families have been touched by this blog. I don’t even know how many I have emailed with but I know that I am thankful to them for reaching out to me. My life and my heart are fuller because if it. I believed this is something I am meant to be doing. Call it a calling or call it whatever you like. It is, next to parenting, the most important thing I have done with my life.

Check out the No Fibular No Problem Fundraising Page and please give if you can! You can help save limbs too!

No Fibula No Problem?

So much on my mind as I type this. Nick has been having some random pain. It’s mostly gone. There is a hot patch on his leg. Basically right in the middle of his leg in an indent created by a few half pin scars it’s warm to the touch. Not swollen, not red, very slightly tender and warm. These things had me on the phone with Allison from the RIAO almost in a panic. Talking it out with her we both decided Nick was probably and justifiably hypersensitive after all he had been though. After I hung up with her I realized I was probably hypersensitive too.

All the excitement of the previous day created a kind of hangover and then to have Nick in pain created a bit of panic. Of course I was worried that there was an infection brewing or something equally horrible. My chest tightened. I became short with the kids. I ate 1/2 a pack of twizzlers in 3 minutes.

After talking to Allison I was calmer but still had this tightness in my chest. I am really worn out on worrying. Really. Nick is too in a way. He basically was insisting that we go to Dr. Standard even though I said he was fine because his point was “I wasn’t fine before and we didn’t know”.

He is right. We are dealing with the fear of the surprise surgery. Thinking all was well and done and then getting hit like a ton of bricks. Maybe we are in a similar place Nick and I.

Right now Nick is not to jump or run but he is still walking. Generally he’s got to take it easy. He was calmer today. There were some conversations on Facebook in the Fibular Hemimelia and Limb Lengthening Awareness group about the fact that it is “fibular hemimelia” but it’s really the tibia that sees all the action surgery wise. If someone has a fibula it essentially goes along for the ride. For whatever reason that stuck me as interesting.

When lengthening the tibia the fibula has to be cut and it is connected to the tibia. No pins and wires are in the fibula but it is pulled apart as well. Literally going along for the ride. Anyway sometimes it does not reconnect but for some people it is a non issue. It is ok to have two pieces of fibula not connected. For some people it is a problem which made me feel like Nick is kind of lucky to have no fibula to worry about at all. No Fibula No Problem.

Leg lengthening number three is over!

Nick’s leg is healed. His arm is healed too. In the words of Dr.Standards PA Allison, Nicholas is “super healed”.

Super healed!

No more braces or boots!

Super healed!

His right foot even grew too big for his summer shoes. I can’t remember his right foot ever outgrowing a shoe before his left. It’s pretty amazing.

It was a happy RIAO visit… my boy didn’t want to leave. He was enjoying the cable tv and he made another friend with a broken arm. I guess it’s not such a coincidence at an orthopedic clinic but it’s funny to me. Nick was a little sad not to get to see Dr.S (he was in surgery) but he said “I really like Allison. I mean I like her like a friend”. I think he thought I thought he meant romantically. LOL

I have waited for this day since January when the mega fixator was put on. I have dreamed of hearing that the bone was finally healed and it’s here. Nicholas is so happy. He was running down the hall at the the RIAO.

Without the boot on his gait is off but it still feels funny to him to walk barefoot. We’ll give him time to adjust and get physical therapy down the road if needed.

I am listening to the kids playing and need to put them to bed but at the moment, in addition to feeling elated I am exhausted! The emotions of the day, the drive, it all wears me out. What a great reason to be super tired.

Super Healed!

If I had the energy I would write a love note to the RIAO! I am already thinking of doing something special for the all the folks who saw Nick through this. It takes a village (and one wizard of a doctor of course). I can’t name you all but so many people helped us get through this (almost a full year of ups and downs).

Thank you!